Please include a photo of your child with a brief biography of their life with AMC,
along with a message of how you or others have been inspired by your child and their will against AMC or a message of inspiration to other children with AMC.
*If your application is chosen for reimbursement, your child's photo and/or biography may be publicly posted on Alexandra's Ambition Foundation's social media sites including but not limited to
our website, Facebook Page and/or Twitter account.
*Recipients will be randomly chosen following the close of our application process on April 30, 2017. Qualified selected recipients will be notified by May 15, 2017.
Only one application per child will be accepted.
Their little boy was due in early 2016 and all tests showed he had no abnormalities. At Sol's 20 week ultrasound Genetics found that he may be affected as well. After many tests, ultrasounds and even an MRI it became certain that he was affected and he appeared to have a contracture in his neck making it seem very unlikely that he would survive birth. On Christmas Eve 2015, Sol blessed our world alive and crying! However, within a few minutes he started to fatigue and needed to be intubated. He spent three months in the NICU at UW-Madison until he was big enough to come home following his tracheotomy and g-tube placement. Since being home Sol has continued to grow stronger and is able to tolerate a device on his tracheotomy that allows him to talk and his family to hear the sweet sounds of his voice. Sol will start casting this fall to attempt to correct the strongest of contractures which are in his knees, with the hopes that one day he will be strong enough and up on his feet.
Go the Distance during our Annual Race to Walk 5k.
Go the Distance
Upon Lua's birth, her parents had no idea what to expect and only heard the worst. At two weeks old, Lua started moving her feet and eventually moved her legs slightly and was gaining more strength throughout her body. However, she remained very weak in her upper body and head and neck and they had to decide whether to have a tracheotomy and g-tube placed or to let her pass. After spending three months in Milwaukee's Childrens Hospital of Wisconsin, Lua came home and began her fight with AMC with occupational and speeh therapy twice a week and monthly visits back to Milwaukee. Unfortunately, in October of 2014, Lua came down with a bad cold and despite recovery from her cold, she suddenly developed a Pneumonia and passed away at home. In her passing, her parents had many tests done in an effort to find a cause of her condition. No answers were found and a short time later, they found out they were expecting again...
We're here to help you Go the Distance to the
AMCSI 2017 Arthrogryposis Conference in Las Vegas, NV!
In 2016, we went the distance for...
Alexandra's Ambition Foundation will proudly fund the registration fees (up to $110.00 per applicant) of the parents, legal guardians or other family members of 20 children diagnosed with AMC that will be attending the AMCSI 2017 Arthrogryposis Conference.
Lua and Sol are sister and brother and were both born with an underlying neuromuscular condition along with Arthrogryposis Multiplex Congenita. Lua would be just about 2 1/2 years old and Sol is 8 months old. They were both born not moving at all and in respiratory distress. Sol and Lua's parents had never heard of AMC before the birth of their daughter in March of 2014.
Needless to say, the family of Sol and Lua have a long road ahead of them but they will keep moving forward in their fight against Arthrogryposis Multiplex Congenita and it's complications.
Let's Go the Distance with them!